Hi. My name is John, and I’m a COVID Longhauler.
I have never and likely will never meet Jeremy Devine. Nor will most of you.
Yet that doesn’t stop me from thinking it wouldn’t be an entirely bad thing were he to stumble into a honey-laden pit and become the object of intense interest for a troop of bullet ants.
In March, Devine, a resident psychiatrist at McMaster University in Ontario, Canada, (which means he’s still in training, so perhaps we should give him a modicum of grace, as that book learnin’ thang is a process) wrote an opinion piece for the Wall Street Journal in which he said of Longhaulers:
“Long Covid is largely an invention of vocal patient activist groups.”
He goes on to decry the National Institutes of Health’s $1.15 billion investment into research of Longhaul COVID, saying:
“Legitimizing it with generous funding risks worsening the symptoms the NIH is hoping to treat.”
To which I say:
According to Devine, the fresh daily hell you and I have been going through for the past add-em-up months is nothing more than an incident of mass hysteria.
Listen: I get it. Opinions, as the saying goes, are like our backside orifices in that everybody has one. Equally true, as in Devine’s case, is that some people reveal they are one when they put fingers to keyboard.
In the wake of Devine’s piece, the expected back-and-forth exploded.
On one side, you had biopsychosocial ideologues piping up with the familiar refrain of “patients reject truth when their doctors say their condition is psychological because of the stigma around mental illness” (an unfortunate truth).
On the other, you had Longhaulers, Dr. Fauci (who, last I checked, has actually completed his training) and other physicians firing back with more intellectual variations of “Yo Mama.”
And, of course, neither side convinced the other of a thing. Welcome to America, Version 2021.
What that back-and-forth did do was distract us from an opportunity to actually advance the narrative on mental healthcare. Instead of arguing about whether Longhaul COVID was a real biological illness, we could have said: “OK, fine. What if it is really all in our heads? Ya know what else is in our heads? Can we talk about that?”
Let me explain.
For the sake of argument, I’m willing to conceded for a moment that the intense fatigue, joint pain, insomnia, horrible taste in my mouth, chest pains, rapid heart rate, total lack of ability to do anything involving exertion, confusion, speaking of random words I don’t intend to say and other assorted happy-happy-joy-joys are all in my head.
Does that make these symptoms any less real?
When practitioners of traditional medicine cannot find an accepted explanation for the existence of a patient’s concerns, they too frequently dismiss it as “in your head” and wash their hands of the matter while collecting large sums of money for doing zero good and, more to the point, actually doing harm. Perhaps a better response would be to recognize that “mental illness” is not about made-up stuff and rather is about another internal organ of their patients for which they should show concern: the brain.
So fine. You want to say that my tongue looks normal and that my MRI is normal and there’s no goopy film on the back of my teeth? Cool. I accept that. I didn’t need you to tell me that goop doesn’t actually exist. I’ve spent far too much time brushing, flossing, scraping, rinsing and rubbing to need your medical opinion on the presence or lack of presence of something I should be able to verify with one of the five accepted senses.
But do not imply that I am making it up.
Perhaps a better way to proceed would be to investigate what is happening in the brain of someone who had a virus demonstrated to be able to pierce the blood-brain barrier that is causing the signals sent from the various signal-transmitters that run from mouth to thinking thing to be misinterpreted.
Nothing — absolutely nothing — that we feel is anything more or anything less than a chemical signal sent by our brain to certain cells. That is a biological process. It is not something that belongs exclusively in the realm of those who want to talk to us about our mothers.
OK, let’s get deeper for a moment.
I put forward the belief that everything is knowable. We just don’t know it all yet. And we never will.
In addition, things we currently think we know, we’re 100 percent wrong about. Remember: At one point in our not-too-distant past, the prevailing wisdom on where babies came from was that those little things new, higher-powered microscopes allowed us to see in droplets of water grew into them.
No, I’m not making that up.
The people who believed babies grew from what we now know as paramecium were some of the greatest scientists of the day — a day my great-grandfather lived in, and I met him. We laugh at them now, but to suggest that something shot out of a guy and merged with something that dropped downward from a woman formed an actual human being would have been what made them laugh then.
As Mulder said in the X-Files, the truth is out there. About everything. To think we as humans are at the pinnacle of enlightenment is a special kind of arrogance. That which escapes us now will at some point be found. Or it won’t. And if it’s not, it’s because we’re really not all that far down the line on the grand spectrum that runs from ignorance to omniscience.
If more traditional medicine practitioners showed some humility when they are unable to uncover the source of their patients’ symptoms because of their own human inadequacies or the current limitations of the greatest minds in their field, perhaps contemporary thought about those with mental illnesses would be more kind to its sufferers — maybe even as kind as we are to those whose kidneys or livers or hearts aren’t functioning as we believe they should.
So sure, none of traditional medicine’s tests found squat with me. But that doesn’t mean there isn’t something there. Whether it’s in my brain, my gut, my lungs, my heart, my blood vessels — there is something there, and each and every one of my Longhauler brethren can say the exact same thing.
Are some people caught up in the novelty or hysteria of Longhaul COVID being a thing and are thus developing the actual symptoms of what is being discussed? Sure. People actually fought each other over Cabbage Patch Dolls at one point. We as a species are quite capable of getting caught up in the moment.
Here’s the response to that: Isn’t the brain an amazing organ to actually allow that?
Yes, we can waste time arguing the question of whether Longhaul COVID is an invention of the mind or an actual condition. Based on my own personal experiences, I lean toward the latter.
But even if it’s the former, to be so obnoxiously dismissive about it shows exactly how right people are to still believe there’s a huge stigma when it comes to what is truly an ailment of the amazing, fascinating, still-largely-unknown brain.
And maybe if we own up to that, we can actually start doing something about it
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